Skip to main content

Life of Ryan

Once upon a Saturday morning. 


10 November 2001, only hours after leaving my job on the Friday evening to start my maternity leave, I gave birth to my second son. For the previous nine months I had convinced myself that I was having a girl. I already had a wonderful son and a little girl would complete our small family perfectly. I didn't even have a boy's name picked, so when the midwife congratulated my disgustingly easily labour and invited me to say hello to my beautiful new son my first reaction was total shock and my first words were (yes I am almost embarrassed to say) "I didn't order a boy, I am having a girl, her name is Megan. Can you send him back?" Of course, this shock only lasted a matter of seconds for the moment the midwife placed him in my arms I was hooked to this utterly gorgeous bundle of tiny awesomeness.

 I cannot pinpoint the day or time exactly when I started to suspect that things were slightly amiss, but very early on in Ryan's life, I began to realise he was different somehow. Something was not quite right. I started to make notes in his red 'Personal Child Health Record' (PCHR) that is every new mum's Bible. Ryan's Development 'Firsts': Lifts head clear of ground - 16 weeks. Rolls over - 5 1/2 months. Sits with support - 5 1/2 months. Sits alone - 7 months. Crawled - 7 months. Stands to hold on - 8 1/2 months. Walks holding on - 9 1/2 months. Walking confidently - 13 months.

All seems spot on so far, I didn't present any worries at his 6-9 month check although the health visitor did comment he took a long time to get through the hearing test. At his 2 year review, I was worried! I commented in his PCHR "Very violent episodes - kicking and hitting, not during a tantrum. Totally unprovoked. He seemed also to have his own little language. I can understand him, just, but no-one else could, not even his dad. The advice I was given on this occasion was to not worry, he is probably just a late developer. 

 By his 3 and a half year check, I was really concerned. He was very clumsy, had several falls, cuts, hospital visits, was (and still is) a very sickly child, not potty trained and still not speaking. Wouldn't speak at all to the health visitor who again assured me he was just a late developer. His height and weight were consistently below average but I was told (yes, actually told) to stop being neurotic and attention-seeking.


Real Mothers Quote
I was called neurotic and attention seeking on many more occasions to come too. 

 This is our story of Ryan's journey of Autism and ultimately Cancer. Welcome to the ride of our lives. 

Comments

  1. Anon4 January 2018 at 01:24

    Reminds me of the amused Doctor who laughed when I took my 3(?) year old and said she is not talking. He said "Count your lucky stars" and he was right. We stopped 'understanding' her grunts and arm waving, and within days she went straight in to full sentences. He was right again - she still hasn't stopped talking!

    ReplyDelete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the ...
11 comments
Read more

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c...
5 comments
Read more

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t...
6 comments
Read more

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We...
Post a Comment
Read more

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the ...
7 comments
Read more